my diabetes secret

When I created My Diabetes Secret, I knew there was tremendous potential for a platform for people impacted by diabetes to safely, and anonymously, share what they were feeling. It feels like we, the diabetes community, have only recently matured to the point that openly discussing the mental burden of diabetes is something that we’re moderately comfortable with.

When I began planning the expansion of the My Disease Secret platform to other communities, I put the mental health community at the top of my list because I know that we need to have larger conversations about anxiety, depression, compulsions, obsessions, and other mental health issues. There needs to be a better way to talk about our experiences. There needs to be a better way to shine the spotlight on what is really happening. My hope is that the promise of anonymity will provide a safe space for all of us to talk about these issues.

I’ve seen what My Diabetes Secret has done for the diabetes community. Every time a new secret is published, a resounding “me too” in likes and reblogs follow. Bringing these internal, emotional struggles to the surface has shed a new light on what it’s really like to live with diabetes. Managing that disease is more than just checking your blood sugar and taking your medication, and more and more people are starting to recognize the larger psychosocial challenges that come with living with a chronic disease.

With that in mind, I sought to expand the concept of My Diabetes Secret to other chronic disease communities. First among them is the chronic pain community and mypainsecret.com.

As my presentation moved into the challenges of My Chronic Disease Secret, I asked a number of questions of the audience to try and start a conversation about what about this anonymous sharing platform works and what needed to be rethought. Does an anonymous sharing platform like this only benefit the diabetes community? If not, how might we better engage other disease communities? How might we improve upon the task of providing a platform free of judgement, shame, stigma, and identity to the larger chronic disease community?

The resulting feedback I received was exactly what I needed to hear.

Some don’t see what they are living with as a chronic disease, and may not identify with a site named “My Chronic Disease Secret.” Some haven’t accepted their diagnosis. Some don’t want to, or can’t relate to other disease communities. While there’s much we can learn from each other across diseases, these’s still something to being among your peers. “Me too” can only go so far – I think I stretched that philosophy too far with the initial approach I took to My Chronic Disease Secret. In applying the My Diabetes Secret formula so broadly, I didn’t respect the individual nuances of each patient community. It was wrong for me to think that I could reach everyone at once. This is a process, and it takes time.

The funny thing is, I’ve been having these doubts and criticisms circling in my head for weeks, if not months, but hearing these points from people who were brand new to this idea made all the difference. The people at this meetup only knew of My Diabetes Secret what I was able to convey in 20 minutes, their perspective was fresh. And ultimately, their feedback is part of the reason I’m writing this today.

Part of the reason My Diabetes Secret works is that it’s focused. Instead of trying to speak to everyone, it just reaches one community – people impacted by diabetes. And while my initial ideas about expanding the platform were similarly focused, I got distracted by the prospect of trying to help everyone at once and ended up satisfying none of my initial goals. With all of this in mind, I’m going back to my initial question that started this whole adventure:

I created My Chronic Disease Secret because I felt other online disease communities could benefit from a platform to share their feelings anonymously, free of judgement, shame, or stigma with each other. But I didn’t give these communities the respect they deserve in providing them with their own respective platforms as I had for the diabetes community. If diabetes has its own space, why not cancer? Why not arthritis? Why not mental health conditions? So…I’m going to do that.

Seeing stuff like this come through on My Diabetes Secret reminds me that we aren’t doing enough for the diabetes community. I don’t know exactly who “we” are, and I don’t know what can be done to help people like this, but I know the status quo is not sufficient.

How might we create a more accepting culture for people living with a chronic disease?

How might we empower people to feel they are in control of narrative surrounding their disease?

How might we better battle stigmas that create the shame that hides public disclosure of a chronic condition?

Today let’s talk about changes, in one of two ways. Either tell us what you’d most like to see change about diabetes, in any way. This can be management tools, devices, medications, people’s perceptions, your own feelings – anything at all that you feel could use changing. OR reflect back on some changes you or your loved one has seen or been through since being diagnosed with diabetes. Were they expected or did they surprise you?

I would love to see the perception of diabetes change within the diabetes community. I think it’s too bold to ask that society at large have a better understanding for what this disease is and isn’t while the in-fighting between people impacted by type 1 and type 2 diabetes rages on.

I’ve noticed this back and forth return a bit on My Diabetes Secret. While it pains me to publish those types of submissions, they reflect the perspective of one, if not many of the diabetes community. It’s a shame that we can’t focus our energy outwards, but if that’s where their anger is directed, there’s only so much I or any of us can do.

Many of us share lots of aspects of our diabetes lives online for the world to see. What are some of the aspects of diabetes that you choose to keep private from the internet? Or from your family and friends? Why is it important to keep it to yourself? (This is not an attempt to get you out of your comfort zone. There is no need to elaborate or tell personal stories related to these aspects. Simply let us know what kinds of stories we will never hear you tell, and why you won’t tell them.)

It’s funny, despite having presences on a variety of social media platforms, my enthusiasm for sharing aspects of my diabetes life waxes and wanes. With efforts like #dayofdiabetes, sharing is paramount. But I can just as easily go a week or two without posting a Dexcom picture on Instagram or mentioning diabetes on Twitter. Outside of Dayle’s own diabetes experiences, I don’t necessarily consider anything off limits for the sake of keeping a piece of me private. Sometimes I simply don’t feel like sharing anything because I don’t feel like sharing anything. Boring, right?

For some reason, there’s been a lot of activity on My Diabetes Secret over the past few days. Actually, I should specify, there’s been a lot more activity than normal on My Diabetes Secret.

I keep an eye on the likes and reblogs to make sure I’m doing everything I can to ensure this blog reaches the people who need it most. Yet, for reasons I can’t decipher, the number of new followers has increased at a significant rate. I wish I knew what made this stuff “stick” with the diabetes community on Tumblr. I wish I knew what drives people to share, reblog, engage, and interact. I wish I could figure out why this entire experiment actually, kinda works.

My hope is that every single reblog represents a “me too”, and every single like represents a “I hear ya”. My Diabetes Secret isn’t a place to try and one-up the struggles of others, but the shared emotions are clearly connecting.